After writing my post yesterday, I was wringing my hands worrying that I was a little heavy on the woe is me. In writing this blog, I try to convey what my life is, without singing the blues. It really isn't easy.
Anyway, the more I thought about it, I decided to leave the post from yesterday be. Misery really does love company. Not to say, that we want others to go through what we are going through. Speaking for myself, I wouldn't wish this on my worst enemy. Still, I know the chronically ill readers need to hear what someone else, just like them, is thinking and feeling. As for me, reading about others that are going through exactly the same things as me is validating. Living a chronically ill life is incredibly lonely, so we need the validation to know we aren't crazy. It is life saving. To make this easier to understand, it would be like seeing a UFO and the difference between seeing it yourself or being with a group that can testify they saw it too. I cannot believe the life am living and all that I have lost. It simply does not compute, even after seven years. Reading about others in my exact position helps me tremendously.
Andrea Bocelli is singing "Time To Say Goodbye" on my playlist....hhhmm, I did get a little heavier in the last paragraph, with such an emotional song in the background. Oh, here comes Viva La Vida....my special song/memory with my sweet grandson, Brayden....hey, how's that for my ADD at work???
I have decided to chronicle my condition for a few consecutive days. Up until now, this hasn't been my approach with my blog. I'm hoping that it comes through as sharing my life, with its daily struggles, rather than "hey, look how sick I am". Just a snippet of a couple of days.
I have a feeling this blog is going to get real boring...real fast!!
I didn't get to sleep last night until sometime this morning, and slept on and off until Jimmy came home from work at 6:00. Not a good day. Each time I got out of bed, it was like all the blood has drained out of my body and I had to fall back in to bed. The overall intense weakness was pretty bad, along with numb arms and face. I would have to say that the worst offender was the horrible feeling like I have been heavily drugged. When I have that symptom, which is almost every single day, it is like my brain as a muscle just cannot perform...period. My brain is totally drained and exhausted. These days are hard to describe...I wish I could. As a well person, I never experienced my brain not working...having the mental strength for absolutely nothing.
Today, like most days, I dropped every single thing I picked up. I have been told not to bend over, but I have to pick up what I've dropped. It is especially fun when I drop the item again, on the way back up from picking it up the first time, then again, and again....it is always a curse fest! (the curses are bumped up a notch each time I have to re-bend over...so happy we don't have a parrot!!) Yesterday, I bumped something in the kitchen cabinet and it knocked over a container with toothpicks. I had no choice, but to leave them on the floor. This happened while I was already overextending myself cooking dinner. It is horrible when I drop a something made of glass. With the tile floors, the glass goes flying all over. This always seems to happen when I am home alone. Because of our precious pooch, I have to clean it up....curses, curses, curses!
A few hours ago, I misplaced a prescription....okay, I'm lying....it was my mouth guard :D...I hate to add to the visual you all must have of me as it is!!! It had to be within five feet of my nightstand. UGH!!! Jimmy was helping me tear the bed apart, looking under, behind, etc. I was determined to find it, but being such a rough day to begin with, all the bending over and lifting was sending me straight downhill. This would all be due to the POTS. I was panic stricken, not because I couldn't find the prescription (forgot I lied..mouthguard), but because I was upright and my symptoms were going through the roof. After maybe five minutes of searching, we found it. My body was destroyed, it was horrible. Today is an example of having zero tolerance for any activity whatsoever. My days are more likely to be like today.
A lot of times, friends and family ask how I am and what specifically is so difficult that particular day. This is always such a hard question to answer. I am so overall physically and cognitively sick, I just cannot put it in to words.
I did attempt to play Words With Friends ...(big mistake :) ... It was not a day for phone calls, cooking, washing sheets or taking a shower...just looking forward to sleeping and escaping...
Earlier in this post, I mentioned how lonely life is being chronically ill. I want to clarify that I have nothing but a tremendous amount of love and support coming from every imaginable direction. I could not possibly be more blessed in that department. There is so much I have to say about this subject. Once I am done this little daily diary, I plan on writing about that.
Well, the Beach Boys are now singing "God Only Knows"..what I'd be without you...and YOU all know who you are....
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